Psychosomatic medicine and the psychologising of physical diseases

They still missed most of the cases, they still do today, we know delayed diagnoses are common and usually only confirmed by MRI.

Sorry but I don't think this is the case. The great majority of cases of MS can be diagnosed clinically. The difficulty is that in clinical terms the key feature that distinguishes the disease is recurrent attacks with remissions. So it is difficult to diagnose MS rather than some other organic brain lesion on the first attack. I am pretty sure that MRI has made only a marginal difference to the estimated prevalence of the disease.

Making some wrong diagnoses is not in any sense pretty much the same as it being standard teaching that a condition is psychosomatic. To be honest, if I was a doctor wanting to make up my mind about the origin of ME, having advocacy groups raising red herrings like things would very strongly push me towards thinking it was all make believe. PWME need to be very aware of that.
 
Medicine gets practiced badly quite often but in the last fifty years there has been no suggestion in standard medical practice that MS is in any way psychosomatic.

Yes, I think there has been a misunderstanding. It's correct that MS is not viewed that way and I wrote my first post on this erroneously believing that SolveCFS had argued that before MRI, MS was often misdiagnosed as psychiatric illness (what they actually said was different).

I doubt that my neurologist was telling me anything other than a story of how MS in some of his patients was misdiagnosed as conversion disorder or similar.
 
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Yes but be fair, this is a fringe article by a crackpot in an unheard of journal in German.

But to be even fairer Solve ME are not wrong, people really were saying that about MS even after MRI was developed. Saying noone believed it and it was of no consequence would look to me a lot like rose tinted hindsight.

Such crackpottery gave us the PACE trial, which temporarily influenced best practice in treating ME in the UK and on a global scale when it should not have.

My fear is that during the struggle to overturn ignorance, it has more power to distort the perception of truth than it does after reason has prevailed.
 
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Such crackpottery gave us the PACE trial, which temporarily influenced best practice in treating ME in the UK and on a global scale when it should not have.

I disagree. The PACE trial came from the received wisdom. ME really has been seen as mostly psychosomatic. MS was never in any way comparable. Solve were clearly suggesting an analogy and there is none. Those who claimed that MS was psychosomatic after 1950 were akin to Gwyneth Paltrow and Goop or Mexican stem cell cowboys. To link this to PACE is completely out of context.
 
I actually have some concerns about the material Solve put out. This came up because we discussed my providing a Q and A session, which hopefully we will do.

The statement quoted: But, after the invention of the MRI machine, which provided images of lesions on the brain and spinal cord, the medical community moved away from this incorrect and archaic depiction of MS. is simply misinformation and presumably has been writtenqby someone with no medical training or general knowledge. Every medical student knows it is untrue.

Solve have done a great job raising awareness and supporting research but I do worry about trying to provide medical educational material when as far as I can see nobody at Solve has medical training. Sources like Health Rising should not be quoted because they are full of misleading material based on trawling and repeating of a lot of mostly rather poor quality science. Most charities that do this involve a medical adviser.They may not be up to scratch but they are unlikely to allow through stuff that everyone knows is not the case.
 
I disagree. The PACE trial came from the received wisdom. ME really has been seen as mostly psychosomatic. MS was never in any way comparable. Solve were clearly suggesting an analogy and there is none. Those who claimed that MS was psychosomatic after 1950 were akin to Gwyneth Paltrow and Goop or Mexican stem cell cowboys. To link this to PACE is completely out of context.

I dont think so, I see PACE as the same phenomenon as Münch in a different context.

I dont agree PACE was received wisdom at all, it was a snowjob designed to manufacture received wisdom.

Received wisdom was what I was told by my GP in 1982 about how nasty recurrent EBV could be, how I had to rest and gradually build recovery, not rush it and precipitate a relapse. As I see it this kind of received wisdom subsequently took a leave of absence under the influence of BPS blaggers like the PACE gang who were responding to the political imperatives of the 80s and later.

I think what SolveME are getting at is there is a pattern where some opportunists claim poorly understood diseases are psychosomatic while they can get away with it.

Eventually the scientific establishment makes up its mind and beats miscreants into the fringes but while scientists are making up their minds miscreants can wreak havoc and in PACE they did just that and took center stage. IMHO !
 
Don't wish to take the thread off-topic, but there's a claim in Solve M.E.'s letter:


I do not know where this myth started, but I've seen it repeated by a number of pwME for many years. It is simply untrue.

What we now easily recognise as the characteristic demyelinating lesions of multiple sclerosis were characterised in post-mortem cases by Charcot in 1869 ("Histologie de la sclérose en plaques, leçon faite à l'hospice de la Salpêtrière par M. Charcot et recueillie par M. Bourneville").

While it is true that some of the early symptoms of MS, such as limb weakness or loss of dexterity or even ataxic gait might well be attributed to hysteria for many years (especially if the patient has a relapsing-remitting clinical course), focal neurologic signs pointing to an organic diagnosis will eventually supervene.

If a patient has e.g. pyramidal signs such as spasticity, hyperreflexia, or a plantar extensor response (characterised in 1896), those all point away from a psychosomatic diagnosis. So would Lhermitte's sign (characterised in 1917). Optic neuritis, common in MS, is also incompatible with a psychosomatic diagnosis. These should not have eluded a neurologist, even in the pre-MRI era, for most of the 20th century.

There was even a quite famous diary ("Journal of a Disappointed Man") written by the English naturalist Bruce Cummings, writing under the pseudonym of WNP Barbellion, that described his diagnosis of MS, then called disseminated sclerosis, ca. 1915. In a subsequent published diary ("A Last Diary") he details his last two years of life (1918-9). (I've read both; the writing, and the unconscious pathos with which he relates his end, is poignant and beautiful.)

MRI has made early diagnosis of MS possible, but that is all.

[Edit: "Journal", not "Journey"]
MS pre scan was considered a predominantly male disease- women were written off as hysterical.
There is an inbuilt gender bias in many areas of medicine that many will be familiar with.
 
MS pre scan was considered a predominantly male disease- women were written off as hysterical.
I don't think that was ever considered true in Britain. I've gone back to a very early medical text, the famous System of Medicine (1911), edited by Sir Clifford Allbutt, and the increased female prevalence was known back then:
The equivocal characters of disseminated sclerosis are already but too well known to all of us; occuring, as it often does, in young persons, especially in young women, its differentiation in early stages may be impossible.
Other relevant quotes from SoM:
"Disseminated sclerosis may in some cases lead to confusion; when this disease was first demonstrated in England, by Moxon, I saw many cases of general paralysis, in general hospitals, which were regarded as insular sclerosis. Insular sclerosis usually occurs in young persons, and its progress is slower; there is a difference in the speech which is more staccato, the movements are rather jerky than tremulous, at least for a time; there is often nystagmus, which is very rare in general paralysis, and muscles are often picked out in various groups; the special degradation does not follow the lines of latest and most special development."

". . . for it is on this ground that we hold certain symptoms known to be indicative of structural disease, such as optic neuritis and atrophy, or electrical reaction of degeneration, to be inconsistent with unmixed hysteria."

"In disseminated sclerosis there are many opportunities for error. First, because the manner and general appearance are often such as is commonly called 'hysterical'; next, because, as Dr. T. Buzzard has shewn, disseminated sclerosis, as seen in practice, often varies widely from the abstract type of the textbooks. The characteristic tremor and the staccato speech may be absent, and the symptoms may be reduced to mere paraplegia with increased tendon-reactions. And, what is still more important, the advance of this disease may be characterised by transient paralysis, transient loss of sight, first in one eye, then in the other, and other indeterminate and fluctuating symptoms which are sure to suggest hysteria. Add to this that the outbreak sometimes follows a mental shock, and it will be apparent how great the difficulty of diagnosis from hysteria may be. The plantar reflex, however, is in most instances very helpful. In pure hysteria it is either absent or normal; in disseminated sclerosis it is generally of the extensor type."

There is an inbuilt gender bias in many areas of medicine that many will be familiar with.

I don't doubt it!

I once saw a pwME tweet at one of the PACE authors, saying something like "but MS was always regarded as psychosomatic", which is why this particular claim stuck with me. I'm always open to correction if I make errors (as I frequently do, especially post-ME) and to hear others' opinions. Regret that a post genuinely made in good faith was seen as so unhelpful.
 
The problem with received wisdom is that it is what the most dominant voices say. Trainee doctors are presented with the idea that women are at risk for mass hysteria and that functional disorders are common because the people who hold those views teach them. They become givens that are not questioned because of the authority behind them.

ME was a collection of symptoms, a syndrome, which happened after epidemic diseases. If the voices who claimed it was really deconditioning had not been listened to blindly - a few moments history taking would have shown patients were not all deconditioned, after all Peter Behan did experiments using athletes who were still much fitter than usual but could no longer do what they used to - then received knowledge would not be that ME is not a real disease.

I'm not suggesting that patients with MS have never been misdiagnosed as psychiatric (in fact, I specifically made the point that some of the very early signs, depending on the presentation, might well be mistaken for CD). Other symptoms of MS (depression, fatigue, emotional lability) might also be mistaken for affective disorder. I'm also sure that such misdiagnoses were much more common in the pre-MRI era.

I first began attending an MS therapy centre in 1994. Soon after that it became known that MRIs could definitively diagnose the disease and some people wondered how much it would cost to get a private test done.

At that time, MS was basically diagnosed as Possibly MS, Probably MS and Definitely MS. The patient was not told until the third but in practice they found out when they saw a locum or it was mentioned by mistake. This caused a lot of distress as people did not know what was wrong with them for years in many cases.

I am sure, with what I know now, that there was great fear that someone would be told they had MS when it was really hysteria. Despite a great outcry from patients the practice only really changed when MRIs became common.
 
If I remember correctly, Nancy Klimas has said that MS was frequently misdiagnosed as psychiatric before MRIs.
yes she says it was called 'hysterical paralysis' in Unrest (not sure if those are her exact words).

This article includes a little about the history, but also a first hand report of the authors experience in getting her MS diagnosis.

The downside is that many neurologists and internists still use conversion disorder (hysteria with physical symptoms) as a catch-all diagnosis for patients who are having their first MS attack. Many of us can attest to this first-hand, running the gauntlet of doctors who dismiss our weakness, numbness and brain fog as manifestations of mere stress, panic attacks, and depression, including yours truly.

My own anecdotal evidence sounds the echoes of Victorian-era attitudes towards women and illness and goes thusly:

In 1998, suffering symptoms that would turn out to be my first MS attack, I visited my PCP, who was a 30-year-old woman. I described and demonstrated my numbness, weakness, and foot drop, as well as a breathing problem that would later send me to the ER. Her first question was: “Do you ever have panic attacks?” Flabbergasted by this strange question, I denied ever having had one. “Well, I’m not going to give you steroids,” she went on, “because you came to me last month for an anti-depressant, and steroids can worsen depression.” Distressed, I voiced my concern that she wasn’t going to try to help me.

She stood over me, and wearing a look of mild contempt, chose my appointment time to express her view that women are basically hysterical, misbegotten creatures whose neurotic predispositions make it impossible for them to be taken seriously. She then turned her back on me and left the room.

Two weeks later, I saw a 65-year-old male neurologist who interviewed and tested me thoroughly. He did not offer to induce orgasm to assuage my feelings of powerlessness in a patriarchal society. Instead, he put me in the hospital for round-the-clock IV steroids and told me he was 90% sure I had MS.

‘Tis a tangled web you have woven, Dr. Freud.
https://multiplesclerosis.net/living-with-ms/portable-history-ms/
 
Yes but be fair, this is a fringe article by a crackpot in an unheard of journal in German.
To be even fairer, fringe crackpots in Germany should not be underestimated. They are running this place:

https://www.klinikum.uni-heidelberg...internal-medicine-and-psychosomatics/about-us

They have an experienced team of about 60 doctors, psychologists and social workers who devote themselves to the patients. My GP tried to trick me into going there so that they could devote themselves to me.
 
To be even fairer, fringe crackpots in Germany should not be underestimated. They are running this place:

https://www.klinikum.uni-heidelberg...internal-medicine-and-psychosomatics/about-us

They have an experienced team of about 60 doctors, psychologists and social workers who devote themselves to the patients. My GP tried to trick me into going there so that they could devote themselves to me.
Reading this and... you really can fool some people all of the time. Not even a question anymore, even in circumstances that should make that impossible it definitely happens.

Zero difference between this and an astrology department at NASA. Amazing.
 
I dont think so, I see PACE as the same phenomenon as Münch in a different context.

I dont agree PACE was received wisdom at all, it was a snowjob designed to manufacture received wisdom.

Received wisdom was what I was told by my GP in 1982 about how nasty recurrent EBV could be, how I had to rest and gradually build recovery, not rush it and precipitate a relapse. As I see it this kind of received wisdom subsequently took a leave of absence under the influence of BPS blaggers like the PACE gang who were responding to the political imperatives of the 80s and later.

I think what SolveME are getting at is there is a pattern where some opportunists claim poorly understood diseases are psychosomatic while they can get away with it.

Eventually the scientific establishment makes up its mind and beats miscreants into the fringes but while scientists are making up their minds miscreants can wreak havoc and in PACE they did just that and took center stage. IMHO !

The facts which reinforce this perspective for me, which I expect you are aware of but I will reiterate because others may be interested, relate to the way the US government felt it was necessary to draft a few bills from 1996 onwards to ensure that mental health got insurance parity with physical health.

Before that it was open season and the insurance companies were getting away with a few thousand dollars for CBT to cover a mental condition for a time limit of a couple of years compared to hundreds of thousands of dollars for physical conditions and their lifelong treatment and care.

https://en.wikipedia.org/wiki/Mental_Health_Parity_Act

In the 1980s the influence of the US financial system was considerable and in the ascendant. As a graduate coming out of Oxford I knew where the money was as many of my well informed friends were talking about it and the atmosphere in the city was febrile resembling a "frat party". All kinds of shenanigins went unchecked and the credit crunch was one eventual result but there were other repercussions.

All of a sudden from my point of view, doctors forgot the received wisdom about post viral illness which I had received as a younger man regarding EBV and appeared to completely forget the idea that viruses could be recurrent. I was told to my face by a relatively young medic "that doesnt happen" when I told him what was happening to me. The illogic of that statement in a sense advertised that he was under constraints not to admit that what I was saying was true, that the system he was a part of, every bit as much as I was, would no longer countenance that kind of condition.

When I think about the reasons for that, it seems obvious and credible that the US medical health insurance system was influencing received wisdom there and also abroad, including the UK, denying forms of chronic physical illness existed due to the vast cost differences for the insurer and their adversarial approach to claimants and the legal means of settling disputes.

It seems to me this is why BPS took off as a research option for a select few around that time. Proponents of mental health diagnoses for physical conditions were given funds to promote their ideas regarding BPS which were in turn given prominence by publication so they could be used to contend against claimants with a broad range of chronic conditions in US courts. BPS is pseudo scientific legal sophistry used to suppress and supplant the received wisdom which was espoused earlier by medics like Ramsay.

That is the source of the snowjob which manifested as the PACE trial. That is also why we dont want an insurer lead health system in the UK, ever, as the conflict of interest is insurmountable.
 
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'Private Eye' piece on Unum, the American insurance company, and income protection cover, 11 November 2011 | The ME Association
Well, Unum should know. Behind the scenes it has been helping Tory and Labour governments slash the benefits of disabled and sick people for years – going right back to Peter Lilley’s social security “Incapacity for Work” reforms of 1994. Lilley hired John Le Cascio, then vice-president of Unum, to advise on “claims management”. Le Cascio also sat on the “medical evaluation group”, which – according to Professor Jonathan Rutherford in the academic journal Soundings – was set up to design and enforce more stringent medical tests.
....

Yet Unum executives sat on both the mental health and physical function “technical working groups” set up under the Labour government in 2006, which reviewed and finally came up with the new, stricter “work compatibility assessments”, introduced for new claimants in 2008.
Is Labour abolishing illness? (newstatesman.com)
 
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A number of posts have been moved from
Guardian: George Monbiot 'Apparently just by talking about it, I’m super-spreading long Covid', April 2021 - Discusses ME/CFS and PACE


I had an interesting and long conversation with a journalist a couple of days ago. She asked me if I was really saying that I did not think that psychology influenced any illness. That needs a lot of unpacking as we know but I decided that the answer to her question in her terms was YES, that is my position. I was really saying that I did not think that 'psychological factors' affect illness. It surprised even me to say that but if I go through the illnesses - cancer, rheumatoid, diabetes, schizophrenia (yes schizophrenia), stroke, chronic bronchitis... the answer is always no. Asthma could perhaps be an exception but I am pretty doubtful.

The problem I see is that the reports of recovery that Lucibee rightly says are real lived experience are irrelevant. Either the person was getting better anyway or what has changed is an unhelpful belief. And yes I do think people have unhelpful beliefs - people like Paul Garner and a whole lot of people I know whose lives are limited by believing silly things about what affects what.

I agree with Sean that the PACE trial would have picked up real causation of recovery if it was there. The lived experience of getting better is NOT a lived experience of being made better. That is an interpretation, not an experience.

But I also agree with E12 that it may be extremely difficult to distinguish people with PEM from people who, because they believe they have PEM because they believe they have a specific disease called ME, report the same symptom. Which is why criteria are so useless - they are not going to discriminate between symptoms and belief. If anything one would predict that people with inappropriate beliefs about having a specific illness are likely to fit the criteria (if subjective) better than those who actually have it.

The crux of my debate with the journalist is that 'psychology' is the study of thoughts - of events we are aware of. Its bogus application to 'unconscious thoughts' i.e. brain processes that we are not aware of, by Freud was a pseudoscientific disaster. A psychological component to an illness is a thought the person is aware of that actually produces new symptoms. Pretty much all of the plausible situations I can think of fall to either one or other side of that. There is malingering. There is belief in having an illness that you do not have or does not exist, and so on. But if people think they are trying to get better, then they are, and the PWME I meet on this forum are.

In other words: physician/psychiatrist manqué, heal thyself.
 
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I had an interesting and long conversation with a journalist a couple of days ago. She asked me if I was really saying that I did not think that psychology influenced any illness. That needs a lot of unpacking as we know but I decided that the answer to her question in her terms was YES, that is my position. I was really saying that I did not think that 'psychological factors' affect illness. It surprised even me to say that but if I go through the illnesses - cancer, rheumatoid, diabetes, schizophrenia (yes schizophrenia), stroke, chronic bronchitis... the answer is always no. Asthma could perhaps be an exception but I am pretty doubtful.

The problem I see is that the reports of recovery that Lucibee rightly says are real lived experience are irrelevant. Either the person was getting better anyway or what has changed is an unhelpful belief. And yes I do think people have unhelpful beliefs - people like Paul Garner and a whole lot of people I know whose lives are limited by believing silly things about what affects what.

I agree with Sean that the PACE trial would have picked up real causation of recovery if it was there. The lived experience of getting better is NOT a lived experience of being made better. That is an interpretation, not an experience.

But I also agree with E12 that it may be extremely difficult to distinguish people with PEM from people who, because they believe they have PEM because they believe they have a specific disease called ME, report the same symptom. Which is why criteria are so useless - they are not going to discriminate between symptoms and belief. If anything one would predict that people with inappropriate beliefs about having a specific illness are likely to fit the criteria (if subjective) better than those who actually have it.

The crux of my debate with the journalist is that 'psychology' is the study of thoughts - of events we are aware of. Its bogus application to 'unconscious thoughts' i.e. brain processes that we are not aware of, by Freud was a pseudoscientific disaster. A psychological component to an illness is a thought the person is aware of that actually produces new symptoms. Pretty much all of the plausible situations I can think of fall to either one or other side of that. There is malingering. There is belief in having an illness that you do not have or does not exist, and so on. But if people think they are trying to get better, then they are, and the PWME I meet on this forum are.

In other words: physician/psychiatrist manqué, heal thyself.

A thought provoking way of putting things.

I suspect, perhaps because of the nature of human consciousness, that many people, without even realising it, have at least some beliefs that thoughts alone can cause things to happen in the material world. It is in effect a belief in magic, that some how things will happen because we want them too.

It is part of this magical thinking to believe that changing thoughts or really wanting to be better will make people better, even though in most situations it is as rational as trying to think yourself taller.
 
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